Quote:
Originally Posted by BeyondtheRainbow
Up until a few years ago I knew everything about every med I took and I wouldn't take meds until I knew about it. Since I worked in healthcare I had a lot of exposure to meds anyway (and I worked in psych for years which gave me even more exposure to things I'd eventually take....this was bad sometimes because of things like the pdoc where I worked used Seroquel to snow everyone. Consequently I refused to take Seroquel when in reality it worked quite well for me without being even close to the most sedating med I've taken. I may have lost years of working to that.). But knowing was important.
Then in 2011 I became very suicidal and my pdoc and therapist were very concerned because I knew what was now too much to be safe. So from then on I've been asked to not read drug profiles. By now I'm ok to do so but am not allowed to read the parts about overdoses and never will be. But mostly since that time (and now during bad times) the plan is that my pdoc promises to tell me everything I need to know and answer my questions and my therapist will look up and answer questions as well without sharing the entire profile with me. So I had to give up a little control but I still have access to the most important stuff, which lets me find out "did my kidney stones happen because of clozaril?" etc.
could your husband or pdoc be your "information keeper" and answer your questions but not give you a (ok, fine, I'll type what first came to mind because it's kind of funny and Freudian) an overdose of information?
PS I'm so sorry you and your son went through so much.
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This was very helpful, thank you.
After my son was well enough to be released from the hospital that first time , I went back to work. My son required constant blood checks because the meds he's on can be so dangerous. The hospital called me at work, told me my son's white cell count was through the roof and this indicated CANCER and to rush him to the ER . My legs were buckling and the ladies at work insisted I not drive do they drove me to my moms house and she drove. When we got there they apologized and said the increased white cell count was just from the meds and expressed regret for using the word cancer. I could go on and on. I know that everyone makes mistakes but these are pretty big whoppers. I guess the real problem is I have zero trust in my medical professionals most of the time.
My son is now on a medication called a remicade which increases chances of lymphoma.......we had no other option. I had to make the decision for him to use it and it killed me. It's working very well thank goodness. I feel responsible for my son being sick. I worry the drugs they are giving him will kill him and it will be all my fault. I guess I have to admit I have a med phobia and work on that. Perhaps that is what I need to work on in therapy as well as my mistrust of medical professionals.
When my son became sick I developed a death phobia and became certain my entire family was going to die. I can't shake it and I feel like I'm somehow responsible for it.
You mentioned the lost years of employment because of your med fears. I have so much guilt about not working and guilt over not taking meds which might help because there are a few I won't try. But I can't help it. But the guilt of not being able to work and contribute to society is killing me in its own way. I think it's led or at least contributed to a few episodes of psychosis even. But I'm so physically sick and the meds just seem to make that worse. I go to bed every night with sincere hope that I will wake up the next day cured and it never happens. I just hope I can get past this phobia and a med does exsist that will help me.
Thanks for letting me vent.